Friday, August 23, 2013

I am an overplanner. It's a characteristic which has generally served me well . . . I overpack (but am rarely unprepared), I'm an excellent troubleshooter (bring me a lesson plan and I'll show you the areas where things may unravel), and I'm a solidly good editor (just don't check this blog too carefully, since I often just think "eh, good enough" and run with it). So when we decided to try to help Maya switch from a full-sized iPad to a mini iPad and realized that she would need a keyguard (which doesn't exist), I was fairly sure that if I sat and thought about it for long enough, I would be able to create one. And not just create an eh, good enough one, but bang it out of the park on the first swing.

(cue the laughter)

Yeah, it didn't work . . . not initially, anyway. But I did learn a few things, create something decent on the second try, and figure out some tips and tricks that I think would be helpful to any parents/professionals who decide to do something similar on a tablet/phone/iPod.

Background:
Maya is using a full communication app called Speak for Yourself. Her talker is an original iPad in an iAdapter case, outfitted with a durable keyguard. The keyguard is a gamechanger for her----preventing a large number of mishits, allowing her to communicate rapidly and accurately. Here's the problem: the iPad + iAdapter are big. She's a little girl. It's challenging for her to carry the device, to set it up on a table, etc. As soon as I saw the mini iPad and mini iAdapter I knew they would be a much better fit for her----but there was a big problem. Due to the large number (120) of cells in the SFY app, there is just no way for any company to make a plastic keyguard for it---the strips of plastic would be slivers, bound to splinter off. We waited for a different keyguard to hit the market (sure that someone would design one) . . . but no luck (yet). Finally, I decided to see what I could figure out on my own, and this is the best that I've been able to do (so far).

mini iPad/case (left), full sized iPad/case (right)

What I used: screen protector (any old screen protector is just fine), Viva Decor Glass Effect Gel Pen (transparent color), pointy q-tips
This glass effects pen was undoubtedly the perfect choice---it goes on slightly opaque, which allows you to see what you're doing. It dries clear, hard, and without heat . . . so you don't have to be concerned about heating the iPad screen, as you would if you were to use hot glue. It comes in a squeeze bottle and it's not challenging to make lines that vary from fairly thin to pretty thick. It's also very forgiving---easy to wipe up with a fingernail or pointy q-tip if you happen to make a mistake. (Or many mistakes. Not that I would know anything about that.)

Important tip: If you're going to create a keyguard on a screen protector, you must do it after the screen protector has been applied, otherwise you won't be able to smooth out the air bubbles. First apply the screen protector, then you make the keyguard on top of the already applied screen protector.

about to start

This shows how the gel goes on opaque but dries clear. I had applied a second (wet) coat to the half on the left, while the right shows the first (clear, dry) coat.

My Really-Well-Planned-First-Draft-In-Which-I-Made-3-Crucial-Mistakes
Even thought this draft has a few key design flaws, I think the pictures do a good job of illustrating what the keyguard looks and feels like:

The Stuff That I Messed UpCrucial Mistake #1: Think about every screen configuration, and account for it as best as you can. I tried to do this, but didn't fully succeed. Have a look:

1. If applicable, make sure to leave space open for the slide-to-unlock bar! (I remembered to do that!)

2. If your app contains a scroll-able pop-up screen that always pops up in a fixed location, leave a space open to make scrolling easier. (This is the word finder box in SFY, which always pops up in the upper left hand corner of the app and is scrollable).

3. Don't forget the keyboard! If your app has an in-app keyboard, take it into consideration. This is where things started to fall apart for us---with one layer of gel, the keyboard looked fine, so I stopped thinking about it. By my fourth (ever widening) layer, many of the keys were obstructed----you could still press them, but you couldn't see what letter you were pressing. Considering that literacy is so essential to AAC users (and, well, everyone) it's not very nice to obstruct the key labels.

Here was the first draft. Oops:

Good luck finding the P, the Y, the . . . well, about half the letters, actually.

To correct this I had to get a little bit crazy. I ended up building something that slightly resembles a maze, with small openings to account for the letter labels. There was much squinting and muttering during this process.

I did the easy, non-keyboard-involved part first:

And then switched back and forth between the screens to figure out the gaps. I also took a screen shot of the keyguard screen and had it open on my laptop when I was working on the main screen, to make things a bit easier.

*if you've got an eagle eye you may notice that the horizontal lines are slightly higher in this picture that in the original keyboard shot---the reason for that is coming up

4. Think outside the app---what about the main settings page for the iPad? Luckily since the gel is directly on the screen, if you accidentally cover a button that you need to push, you can just push on the gel and it will activate the button (that worked in the first draft picture below). However, if anyone else will need to do any programming or work controls on the device, you might want to keep things as clear, readable, and accessible as possible.

First draft, not very accessible:

Second try, with the "Enable Programming" row cleaned up:

Crucial Mistake #2: If you need to obscure something, obscure pictures---not text. Literacy is the big goal---don't take the words away. In my first draft I tried to follow the lines between the buttons perfectly, but as I added (more aggressive) layers and the lines thickened, some of the text was obscured:

(sigh)

In the second draft I made the horizontal gel lines just slightly above the divide between the buttons. It's hardly noticeable that small amounts of the picture bottoms are missing.

Crucial Mistake #3: Leave space for extra layers. And apply extra layers carefully. Don't get all the-first-one-went-on-so-thin-and-easy-that-I-can-put-this-next-one-on-more-thickly-and-save-time. The time you save in layer application won't seem so sweet when you've accidentally obscured text or buttons and realize you need to start over.

What We've Ended Up With:
I've corrected the mistakes above. It's helpful, but not amazing---Maya would still benefit from something that would prevent more mishits. (She hits buttons with her knuckles while she's reaching for something else with her pointer finger.) That being said, it's only been a week, and we're going to sit tight and see how much she's able to refine her movements and increase her accuracy. And I'm probably going to add a few more layers.

Monday, August 12, 2013

To know that your child can not say the things that she wants to say is nearly indescribably painful. To watch your child develop more or less silently, watching and listening instead of jumping into conversation and interactions, (as you search frantically for solutions that-aren't-coming-fast-enough-I-mean-come-on-she-can't-say-anything-at-all) is a type of heartbreak that is sharp and and slow and steady . . . not like having your heart smashed with a mallet, but more like having it dissected by a toothpick, one tiny scrape at a time. One tiny, tiny scrape at a time.

If I could give my voice to Maya, I would, in an instant. I'm sure any parent of a child with complex communication needs would do the same. Instead, we figure out systems and signs and devices. Maya's got her talker, along with a variety of nonverbal ways to get her point across and a spoken vocabulary of words and approximations that has undergone an impressive proliferation since the fall.

When we're home together, Maya uses her voice and the talker and gestures in a multimodal, nearly constant, communicative way, and we chat back (and model on the talker) . . . and while our communication isn't "typical" it is comfortable. It can almost feel like, when she draws on all of her various communication resources, she's not limited---like she has a wide enough menu of communication options that when she thinks of something she surely has at least one method that she could use to get her point across.

I would like to believe this is true.

I tell myself that this is true.

This is not true.

She is limited, still. She thinks things that she can't communicate. We play guessing games and I think that we often are able to figure out what she is trying to say, but not always.

A month ago I wrote on Facebook about an exchange in which Maya was trying to tell Dave & I something and we had no way of figuring out what she was trying to tell us. She couldn't show us, couldn't sign it, couldn't say it clearly enough that we understood, and then she pulled her talker close and turned it on she hit the button that said "I need a new word" . . . and yet we were powerless to add the word she wanted, since we had no clue what it was.

(scrape . . . scrape . . . scrape)

This afternoon it happened again. Maya had just finished having a snack, and she turned to me and carefully said "Too wah."

At this point, I grab the video camera. Dave wasn't home and I was hoping that if I played this back for him later he might have an idea about "Too wah" that I was missing.

This is what I recorded. This is what it is like.

She quit. She put her head down and she quit, because she could not will me to understand Too Wah. Children with complex communication needs (more commonly-but inaccurately-referred to as nonverbal children) often become passive communicators---they quit. Or, alternately, they rage and breakdown and tantrum. It's the third option---stick to it, don't get upset, stay determined---that is both difficult and essential to foster. I don't really know how to encourage it. I don't know what I would do in Maya's shoes. I think I would want to quit, too.

She gave up.

And then she changed her mind.

The first time we couldn't figure out her mystery word, she gave up. This time she gave up, but only for a few seconds and then she came back. And this time she tried to spell, too! The fact that she thought enough to figure out the first letter of Super Why, and gave it to me as a hint---well, that's pretty big. (That's also indicative of why I'm so obsessed with finding an academic placement for her that will have high expectations, like literacy now-not later.)

We added the button, to the cell that she pointed to initially. (When I opened the screen to add the button she pointed to that cell again, clearly telling me where she wanted the word to be.)

And then we watched Super Why, which everyone loved. Even Will. (The music in this one is pretty loud, so be careful of your volume before you play it)

Saturday, August 3, 2013

Maya loses her balance
and falls regularly. She walks the way a bowling ball rolls down a lane with
bumpers---diagonally, occasionally veering into a wall and bouncing back to
continue crookedly the other way. She seems unaware that her mouth often hangs
open, which leads to drooling issues. She often has a hand or fingers in her
mouth. When you speak to her, she may or may not look at you, or in your
direction. If you talk to her when she is involved with something else it’s
quite possible that she won’t even look up, and you’ll wonder if she’s hearing,
or able to process, anything that you’re saying. She may or may not answer yes/no questions
reliably (favoring “yeah”) and so when you speak to her you wonder if she’s
able to understand what you’re saying or just answering automatically. You may know her (alleged, per her mom)
favorite topics, and try to engage her in conversation, only to be met with
blank, open-mouthed silence. You may
have heard that she can (allegedly, per her mom) use a fancy communication
device, and you turn it on (thinking “this is way too complicated, with far too
many buttons”) and put it in front of her and she looks away, and you say “tell
me something with your talker” and she stares at you or slumps in her chair and
smiles, teetering too close to the edge and looking sure to fall.

-----------

When Maya is excited, she can move with speed that I never
would have imagined a few years ago. I hold my breath when she runs, each
unsteady step seeming sure to lead to a vicious fall, but I am impressed with
the way that she usually manages to steady herself. The surge in speaking that
has happened over the past 10 months tells me that she’s starting to coordinate
her mouth muscles in new, wonderful ways. Maya is clever and surprisingly funny.
She likes to laugh and to make people laugh and will tell “jokes” that are only
funny to preschoolers (like telling us that it’s rainy on a sunny day, or
telling us that she wants an alligator for dinner---each followed by a cackle).
She is creative, pretending that she’s taking her dolls for a walk not to the
grocery store or the doctors, but to the amusement park where they all ride
roller coasters. She has a memory that consistently surprises me (if I tell her
before school that she can have a cookie after school, you better believe that
her first words off the bus in the afternoon are “cookie, please”). I wish I
knew how her brain processes things----all too often I see her focused on
something so intently that I’m nearly sure she can’t hear me at all, only to
have her suddenly turn and answer my question a minute or two later . . .
as if I were rudely interrupting earlier and now that I’ve given her
some space she’ll comply and answer my question. She has reminded me about numerous
appointments that I would have forgotten (“Monday! Speech therapy!”). She is a master manipulator, and has learned
to avoid questions and demands by creating a situation that requires the adult
to abandon their request and responded to her instead----like threatening to
drop something important, or dangling off furniture so that she needs to be
repositioned, or putting her head down and acting as if she’s so tired that she
couldn’t possibly continue. She keeps us on our toes.

Perception drives
expectation

When Maya was two and
a half she was evaluated by the preschool section of the DOE (among other
things, these evaluations determine whether children have impairments
significant enough to qualify for a center-based preschool, where all therapies
would be provided on site). Her scores
qualified her for services across all domains (speech, physical therapy, etc)
but one number stood out: her cognitive functioning was in the 0.04th
percentile for her age. This meant that out of all 2.5 year olds, Maya was in
the lowest half of a percent, cognitively speaking. Based on the data from
these evaluations, it seemed that Maya was severely, severely impaired . . . a
reader of these reports could expect a child that was close to vegetative.
Unable to walk, unable to speak, with almost no receptive language (about 2
words), leaving her unable to understand anything said to her. The lowest of
the low. She needed a therapeutic preschool, where they will hopefully be able
to make some kind, any kind, of progress.

-----------

When Maya was two and a half she was evaluated by the
preschool section of the DOE, strangers who arrived with a flourish, loudly
asked many questions, and then disappeared. She was shy, and her responses
ranged from nervous to puzzled to noncompliant. The woman who would go on to
determine her “cognitive functioning” was late, unengaging, and, well, not very
good. The results come in the mail a month later, and while it’s never fun to
get crappy test results, we see them for what they are (biased, ridiculous, a
means to an end and nothing more). Maya
is signing, making animal sounds, playing in an imaginative way (little animals
go in the barn, little people sit in chairs for a pretend birthday party, etc),
and shows clear understanding of a million little things all day long. She’s
got preferences and opinions, and she is determined. She needs to go to a therapeutic preschool,
where they will hopefully be able to recognize her amazing potential, and have
the skills to work with a child with a sharp brain but an uncooperative body,
to help her gain movement, knowledge, and the ability to communicate what’s
going on in her head.

Expectation drives
opportunity

Before Maya met her preschool teacher, the teacher had
already met Maya. Although we didn’t have the concise, powerful sound bite that
“expectation drives opportunity,” we had that understanding (Dave and I were
both teachers, and we watched students rise to high expectations year after
year) and we were certain to help Maya’s staff set the bar high for her. Prior
to the first day of school, they received a packet of information about her, and
video clips that showed some of her skills and translated her signs. We had
already exchanged emails about her, and the main messages were “don’t let her
trick you into thinking she doesn’t understand you---she always does” and “push
her---she will keep impressing you if you keep pushing her.” Maya had been assigned to the smallest class,
the class of kids who are, by and large, the neediest of the school (that’s
where those evaluations put her, and it turned out to be fortuitous, because
the staff in that room was fantastic). Her teacher saw the strengths in all of
the kids, and pushed. When she showed me ideas for a communication board, we
ran with it at home, and turned it into a word book. The teacher embraced the
word book and then supported our quest for assistive tech, despite never before
having used a full, dynamic communication system in the classroom.

-----------

When the assistive
tech evaluator (L) met Maya, she didn’t expect much at all. L assigned her a
low tech device, despite our insistence (and Maya’s demonstration) that she
needed so much more. L said “I only give these devices to students who can show
me during the course of the evaluation that they are able to use it to make
sentences.” This boggled my mind, as I couldn’t imagine preschoolers picking a
system up so quickly---yet I was sure that Maya could do it eventually. “How
old are the kids you typically give it to?” I asked, and she replied “9 or 10,
usually. Some are a little
younger.”

-----------

We were not willing to let L’s expectations control Maya’s
opportunities, and fortunately, Maya’s teacher agreed. She kept her expectations high (and we hoisted the
bar up a giant notch when we came into school with a new, huge AAC app, set the
iPad on the table, and said “Yeah, we’re sure she can do this.”) . . . and
because of this, we laid resources in front of Maya and let her try it
all. She had opportunities, particularly
the opportunity to be pushed and supported into a large AAC system, that the
majority of 3 year olds simply do not have (although I’d like to change that).

Opportunity drives
achievement

L, the assistive tech
evaluator who determined that Maya should only use a simple device, had a plan
for Maya. She explained that we shouldn’t overwhelm her with a system that
would be too big, or too complicated . . . it would only lead to frustration
for Maya, who then might reject the system and cease trying to communicate with
it at all. We should start small. Maya would have a device that gave her access
to 32 words at a time, a number that was small and manageable. Because the
teacher could create 8 sets of 32 words, she could have a set for art, a set
for lunch, etc. It might take time, but over the next year Maya would learn how
to access the words, possibly even achieving some success with creating simple
phrases and sentences.

-----------

We downloaded the big, full AAC app, and we had a plan for
Maya. We would present words slowly, but (because of the very smart design of
the app) she would always be able to touch a button that made every single word
available to her. We would model as much as we could. We wouldn’t force
anything, but we would become AAC users ourselves, immersing her in it, and we
would leave the door open for her to follow us through (and maybe we would
nudge her along a bit, too). Grammar,
mistakes, times when she pushed the talker away, a favorite word pressed ad
nauseam . . . none of it mattered if she would be able to say things that were
on her mind. We so wanted to know what was on her mind. If we were painting, we
wanted her to be able to say “grandpa” if she wanted to paint grandpa---not to
be limited to a predetermined set of 32-words-that-someone-else-thinks-Maya-might-want-to-say-when-she’s-painting.
We wanted her to have all of the words, to be able to choose her words at any
moment, the same way that any other 3/4/5 year old speaking child can . . . and
she did.

She told us about the weather, she counted, she spelled her
name. She told us her ideas about what we should do on a given afternoon, what
we should eat for dinner, what song we should sing. She told us that she loved
us, and who she played with at school, and that her ear hurt (it was an ear
infection), and who she wanted to Skype with.
She showed creativity, the ability to analyze information, the ability
to make connections, (kind of impressive) memory, wittiness, kindness, and
sarcasm. She could communicate, truly.

Achievement drives
perception

In the fall, Maya will start kindergarten and leave the
security of preschool behind. To find the classroom that will be the best
possible fit for her next year (the most perceptive leading to the highest
expectations and granting the greatest opportunities, so to speak) we have been
assessed, evaluated, and interviewed within an inch of our lives. In recent months we were asked (by the DOE)
to tour certain schools, and several requested that I bring Maya for the
tour/interview. We toured the
facilities, heard about class sizes, visited potential classrooms (with Maya
wandering right into the middle of the action, of course). The school personnel had looked over her
case, watched Maya boldly step into the classrooms, and smiled in a satisfied way
that said yes-this-will-be-a-good-fit.
Until we returned to their offices, and I put the talker in front of
Maya, then ignored her and spoke with the other adults. It only takes a minute
or two of ignoring before she starts speaking up (although if you try to
interrogate her she can hold onto a stubborn silence for.ev.er.) . As she
tapped out a full sentence to request a snack or a drink, I could see a
flicker---“oh, wait a second . . . “---and
as I gently led her into more creative territory (what do you want to do today, who should go with us, what do you think
we’ll see there, hold on---what day is tomorrow, again?) the flicker grew,
and they were wide-eyed, surprised by this quiet girl who had tricked
them. And maybe (hopefully), surprised
by their misassessment.

And, in a mere minute, a huge perception shift. In the
following minutes, the comments that Maya “was too advanced” and “wouldn’t be a
good cognitive fit here” and “clearly needs to be somewhere where she will be
challenged” and “is full of potential, wow!”

In the space of only three minutes Maya’s achievement with
AAC reshaped their perception of her as a learner which raised their expectations
for her academic potential and offered her the opportunity to not be relegated
to an ill-fitting, limiting classroom . . .

In a month-ish, she’ll start in a new school, with a new
staff and new classmates and not a single person that she knows. And so the
cycle starts again . . . and I’ll be sending over a new packet . . . because I
know that my girl isn’t easy to read, and I’m going to try to shape their
perception, to show them Maya that I see---manipulative, sassy, stubborn,
clever, and full of potential.